In the past week, I have had two endoscopies and a CT scan to examine my tumour. In an endoscopy, a physician uses an LED and a tiny camera at the end of a cable. She threads the cable through my sinus cavity to see the tumour at the root of my tongue.
Endoscope
My radiation oncologist performed the first endoscopy. Our goal was to determine whether the tumour was ‘progressing’; in cancer-speak, the tumour was growing. The clinical trialists hope that the immunotherapy will shrink the tumour. But no, the scope revealed that cancer had spread to my epiglottis. Worse: the CT scan suggested that there are now metastases in my lung.
The second endoscopy was performed to learn more about the symptom that gives me the most trouble. Because I can’t swallow, I cannot clear secretions from my throat. You aren’t aware of this, but your body produces 1.3 litres of saliva daily. You continuously and unconsciously swallow saliva and mucus that otherwise would fill your mouth. I can’t swallow, so these secretions quickly fill my mouth.
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As a result, I spend much of the day sitting in my chair, spitting saliva and mucus into paper towels. I can read and sometimes write while doing this. When I fall asleep, the secretions flow out of my mouth and down my shirt in a massive drool.
My wife and I met with an Ear, Nose, and Throat (ENT) specialist to discuss the secretions. She began with another endoscopy. Because she does many more of these, she could see more than the radiation oncologist.
What she saw concerned her: the tumour had grown to the point where it nearly closed the airway to my lungs. I am at risk of choking to death on thickened blocks of mucus that I am unable to swallow.
She recommended that I have a tracheostomy as soon as possible. A tracheostomy is when a surgeon cuts through your neck into the trachea (windpipe) to allow air to fill the lungs. After creating the tracheostomy opening in the neck, surgeons insert a tube through it to provide an airway.
Johns Hopkins Medical School, Tracheostomy.
The ENT will perform this surgery tomorrow. Although frightening, it’s not a particularly risky or painful procedure. I’ll be in the hospital for a few days.
What does this all mean? The treatments I am getting in the clinical trial are, at best, slowing the progression of my cancer. I will stay on the trial as long as they have me. The critical point is that I am out of treatment options.
If, at some point, I can no longer receive care through the clinical trial, I will enter a home hospice program. Unlike in the US, being in hospice doesn’t mean that I cannot seek further treatment (if we learn about one) or get care at the hospital. It just means that we get a higher level of home nursing care.
So, the question arises: given that the cancer is progressing and will likely kill me soon, that the quality of my life is rapidly diminishing, and that I spend most of my time spitting into paper towels, why continue to live?
When I was diagnosed with cancer and then realized that my research career was essentially over, I asked myself what I should do with the time that remained to me. The answer was that I wanted to love God and serve my neighbour. (These are closely linked because God wants us to show our love through such service.)
My photograph. Family Chapel, somewhere south of Avignon (2022)
You don’t need to get cancer to have that mission. Getting sick makes it harder to do certain things. At the same time, cancer helped me with opportunities for service that had never occurred to me, for example, by trying to help my doctors care for me.
But as I became more ill and successive treatments failed, my suffering increased. Before I became sick, I had thought that only a few people experienced suffering so severe that they would be better off dead. In the past year, however, I have experienced seizures during which I was fully conscious but unable to control my speech or body. These are the kinds of problems that can make me wish that I was dead.
But I have committed myself to this mission to serve. So, I ask myself, given the limits on what I can do, is there anything I can do that is sufficiently important to justify the suffering I have to endure? Is my suffering worth it if all I can do is hold someone’s hand?
Caspar David Friedrich, The Cross (1805)
Jesus teaches us that this is the wrong way to frame the question.
At that time, the disciples came to Jesus and asked, “Who is the greatest in the kingdom of heaven?” He called a child, whom he put among them, and said, “Truly I tell you, unless you change and become like children, you will never enter the kingdom of heaven. Whoever becomes humble, like this child, is the greatest in the kingdom of heaven. Whoever welcomes one such child in my name welcomes me.” (Matthew 18:1-5)
Jesus is teaching us to take our lives seriously but not ourselves so seriously. When you identify an opportunity to act lovingly, asking how important that is pointless. We need to be humble: We have no idea what the consequences of holding someone’s hand might be.
If God chooses to share that information with us, we may discover how significant the consequences of our actions are. I don’t look forward to that.
Indeed, the word of God is living and active, sharper than any two-edged sword, piercing until it divides soul from spirit, joints from marrow; it can judge the thoughts and intentions of the heart. And before him, no creature is hidden, but all are naked and laid bare to the eyes of the one to whom we must render an account. (Hebrews 4:12–13
Carl Bloch, The Sermon on the Mount (1877)
Jesus teaches that “Sufficient unto the day is the evil thereof” (Mt 6:34). All we need to do is love God and respond to what God wants us to do to the degree we can discern it. This is the freedom of the lily of the field and the bird of the air.
So, I am still alive because my friends and family love and want to be with me, and I love and want to be with them. My suffering is just a problem to be solved, one day at a time.
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You are sharing your writing and your experiences with the world. As a result you are making the world a better place. You are teaching, and allowing people to experience through your eyes, your feelings, your senses. Your writing will be a gift to many through the years and decades. You are creating empathy for others and making this a better world for all. Thank you for all that you are doing. Thank you for the gift of you being here.
Why are you still alive, Bill? Maybe it's so we can be humble together. That may be an unseen answer all through life, but it takes a shape we all can see now in your life as you share it with us. They say life gets smaller as we age and come closer to the end. Maybe it seems that way to you sometimes as you sit alone. But your life expands as you share it with us, and along with it a feeling of wonder and awe, not just about you, your persistence and courage, but also about the incredible fact that we all share this miracle of awareness that (in your case) persists no matter what afflicts your body. Who knows, as evidence accumulates from near-death experiences, maybe we'll begin to accept that that awareness persists beyond death, independent of what current-day science, and our beliefs, tell us. So why are you still alive? Maybe it's so that we can be left in quiet together with humbleness, gratitude, and love.
You are sharing your writing and your experiences with the world. As a result you are making the world a better place. You are teaching, and allowing people to experience through your eyes, your feelings, your senses. Your writing will be a gift to many through the years and decades. You are creating empathy for others and making this a better world for all. Thank you for all that you are doing. Thank you for the gift of you being here.
Why are you still alive, Bill? Maybe it's so we can be humble together. That may be an unseen answer all through life, but it takes a shape we all can see now in your life as you share it with us. They say life gets smaller as we age and come closer to the end. Maybe it seems that way to you sometimes as you sit alone. But your life expands as you share it with us, and along with it a feeling of wonder and awe, not just about you, your persistence and courage, but also about the incredible fact that we all share this miracle of awareness that (in your case) persists no matter what afflicts your body. Who knows, as evidence accumulates from near-death experiences, maybe we'll begin to accept that that awareness persists beyond death, independent of what current-day science, and our beliefs, tell us. So why are you still alive? Maybe it's so that we can be left in quiet together with humbleness, gratitude, and love.